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Parents of children diagnosed with PANDAS

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L_Haven
L_Haven

I am the parent of an 11 year old diagnosed with PANDAS. I'd like to correspond with other parents whose children share this diagnosis; perhaps we can share information, experiences, and hope.

9 likes, 128 replies

128 Replies

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  • fifide
    fifide

    Posted

    Oops. Just started new thread by mistake. :oops:
  • fifide
    fifide

    Posted

    This is what I was trying to post;

    Hi,

    We have been struggling with this for almost a year now. It would be a big help to be able to correspond with other parents of kids with PANDAS. DS4 has just started prophylactic penicillin but otherwise no-one seems to be able to suggest much in the way of help.

    DS had overnight onset of tics, separation anxiety, regressive behaviours and funny worries. He also had a proven strep infection.

    Does anyone know who actually knows anything about this condition in the UK? It seems that the Drs we have encountered don't agree with the PANDAS theories.

    Fi

    • pandas_mom
      pandas_mom fifide

      Posted

      GOOD LUCK TO YOU! I AM GOING THRU THE SAME THING WITH MY 5 YR OLD SON IN THE USA. NO ONE REALLY HAS ANY TRUE HELPFUL ANSWERS FOR US. SCHOOL HAS BEEN AWFUL 

      (EVEN IF I GET HIM TO GO WHICH IS RARE) .....ITS THE ANXIETY THAT IS THE HARDEST PART OF THIS

    • ron87703
      ron87703 fifide

      Posted

      I am a mental health professional and a lot of the children I work with have had episodes with strep in the past and present - one thing that I have observed is when the children find themselves in a current or up coming event they become very stress - a common defense mechanism used by many is called Somatization: in which they are able to manifest emotional anxiety into physcial symptoms - a simple and easy intervention I have used and had some great success is a weekly planner - this may seem odd, but children including adults handle stressful situations if they have more structure in their lives - however, some things cannot be planned for and when this happens it will cause stress, i.e., acident, loss of life, illness etc... but by using a weekly planner, it can decrease stress and anxiety - try it you may be surprised?
    • lilly64
      lilly64 pandas_mom

      Posted

      Hi There - I am in the USA too and went through this with the school system two years ago.  At first, the school was awful too, but then I got the principal involved and she was wonderful!!!  She accommodated every need my daughter had - set up at-home tutoring, did all of the district paper work for us and continued to monitor my daughter's progress.  This principal was one of a kind, I will tell you!  And it was her last year at the school; she retired.  Now we are in another school since we moved, and my daughter - like I said - has had some issues with the anxiety side of PANDAS, but not the incessent twitching that she did a few years ago.  In addition, she has been very sick the past several months with pneumonia and relapse of it as well as chronic asthma and lung issues.  I have cc'd the principal of this school on every email that I sent to her teachers, updating them.  Not once - never - did this principal message me back.  Not only that, but apparently she just sent the messages to the social worker.  We did not need a social worker this time around; my daughter was just really sick.  The anxiety was a side bar and was not what was keeping her from school.  I told the social worker as much and to back off.

      I know all too well about how these schools operate by wanting to put a five year old - imagine! - into a truancy status!!  I went head to head with the district and told them to back off back then as well.  They were definitely bordering on illegal behavior.

      So, I feel for you on that front, but don't sit back and let them treat you like that.  Make some noise; you are the parent - never to be overruled!

      Peace.... smile

    • lilly64
      lilly64 ron87703

      Posted

      I totally agree with you on structure and it does make a huge difference.  However, I do not believe in over structure either.  Some parents are SO planned that there is not one minute of a day that their child is just relaxing, hanging out.  As my mother has said her entire life:  Everything in moderation.  The moderation philosophy can be applied to every single aspect of life.

      Again, a calendar/planner is a great way for kids to know what is coming up and even help schedule events.  And I am glad that I read this today from you because I actually find myself overwhelmed so much of the time trying to do it all at once - even with my daughter.  So, because of reading your message today, I will sit with her today and we will fill out our planner for the rest of the summer....

      Lastly, I have a great example of how badly my daughter wants structure.  We bought her a guinea pig a couple of months ago.  We have all of the proper things for it and she researched beyond belief for a 9 year old on how to care for it.  However, we now find that she is a bit overwhelmed on when to do what - i.e., feeding, cleaning, etc.  So as of last night, my husband and I spoke with her about making a schedule for her.  She was thrilled about planning, and we are doing that today as well.

      Your comments and suggestions are invaluable lessons on how to schedule life, and also how to deal with distractions that were not planned.  Thank you very much!!

  • Harvey's_Mum
    Harvey's_Mum

    Posted

    My son was told by a paediatric Consultant that he probably has PANDAS in March this year. He is 5.

    He started grunting/throat clearing, eye scrunching, nose stretching and shoulder shrugging about June last year. He had a very traumatic time last Easter so we initially put it down to that though we were worried and confused for him.

    He has a high riding epiglotis which had to be investigated regarding the grunting but after that was dismissed as a cause, at last we were referred to a pediatrician in Derriford hospital in Plymouth. She listened to the symptoms even though my son was not displaying them at the time. She asked him to stand up and do some hand eye co-ordination tests and then asked him to hold his arms out in front and lift the hands up (wrists at 120degrees approx) and his fingers were flickering which is a sign of chorea (pronounced like Korea). This along with the tics and grunting and speedy onset led her to suggest he might have PANDAS. She has 3 other children under her care with the contition. 1 has had a recurrance, 2 have not. She said to take him to the GP immediately if a throat infection was suspected and get a course of penicillin.

    Last week, we all went down with colds/sore throats and right on cue, Harvey's tics worsened even though he says he doesn't have a sore throat. I got some penicillin from an out of hours doctor on Good Friday and today, he is more or less tic free. I put a call in to the consultant to discuss this with her but haven't heard back yet. I am still unsure if this is what my son has as we went away for the weekend and he was extremely excited so maybe it was that. Frankly, I am just so relieved it isn't likely to be tourettes and that he seems to have a recognised condition with a treatment.

    I would love to connect with any mums in a similar situation.

    • helen61387
      helen61387 Harvey's_Mum

      Posted

      Hi, my son is now 15, struggling since age 5 with tics, seen several paediatricians,behavioural therapist and neurologist who did tell us that our sons condition was probably due to a throat infection and to ignore it, really had no help at all and have had a very difficult time often along the years, my son, however has learned to cope with his condition and is a very kind person whom I am very proud of but he is still having to ' cope' as are we. I haven't spoken to anyone else with a child in a similar situation and would love to hear from you, have just found this site so if you get this message please get in touch,kind regards, Helen ,U.K. 
    • traerich
      traerich helen61387

      Posted

      Hi, I just managed to get back into the site after re-registering after being locked out. I am happy to talk to you. I'm not sure PANDAS, PANS or PITANDS would relate now as they are all paediatric conditions. If your son is 15, it may be something else. In my seeking out of answers, I came accross things relating to increasing magnesium and other minerals into diets to aid parts of the brain thought to trigger tics. This is one example that although based on a much younger child, may just provide a spark of something to help your son. http://www.foodsmatter.com/environment_chemical_sensitivity/chemical_sensitivity_general/articles/tics_chemicals_diet.html

      My son is 11 and has just started secondary school. He is coping ok but stress seems to bring on a bout of short-lived tics and keeping things like homework well structured seem to ease them considerably. Kind regards, Tracey.

    • GMT111
      GMT111 helen61387

      Posted

      I don't know whether you've had any success yet Helen but you could join pandas pans uk on Facebook, there are over 300 parents with children with PANDAS/PANS. What you're describing certainly sounds like it.

  • Loobs
    Loobs

    Posted

    it is such a relief to hear that there is a UK doctor who is actually diagnosing PANDAS. our experience so far is that nobody knows enough about the condition to make a diagnosis. the paediatrician we seen just said it is all classic tourettes and that although there is a link between strep and movement disorders there is no evidence to back it up? we have been lucky to have a supportive GP who has prescribed us 250mg per day of penicillin which is keeping our sons tics to a minimum, prior to that his body was jerking all over the place. 3 days into the penicillin things turned around completely.

    we are waiting to see a neurologist at yorkhill hospital in glasgow so hopefully they will be able to help. we were contemplating taking him to the US as I have been emailing a doctor over there who is a PANDAS expert. i have also been keeping in touch with other PANDAS mums in the states who have been a fantastic support. if you need more information i would recommend you google \"pandasnetwork\". Diana Pohlman runs the site, her son has PANDAS, he has had IVIG and is doing great.

    please all keep in touch, we need to make people aware of this condition, there must be kids all over the place being diagnosed as having tourettes syndrome when its actually PANDAS.

    Lou

    • vicki56072
      vicki56072 Loobs

      Posted

      hi could you tell me where i can go to actually get a diagnosis x
  • may51
    may51

    Posted

    Hi

    i would love to be in contact with other parents who are sadly going through the same experiences as ourselves. Our now 6yrold son was diagnosed with PANDAS when he was 3. He had sudden onset severe compex motor tics and OCD(which he still has). Our GP sent him to a paed as she was concerned it was epilepsy. Numerous blood tests were taken and PANDAS diagnosed. We have been on the 250mg Penicillin since that time and there has been an improvement. We have seen a neurologist once and had a MRI done, just to rule out anything else. Our son is settled at school but has great difficulty with handwriting although his reading is good. He still has to wear a nappy at night and still manages to wet the bed every night. He has frequent joint pains. We are now concerned that he is displaying ADHD behaviour which is a new and worrying sympton.

    We feel very alone, often misunderstood even within the medical profession and fearful of the future. We are reluctant to start any other medication as we are worried about the side effects.

    We are more than prepared to travel anywhere to meet the right Dr who could help and advise us. Does anyone out there have any suggestions? sad

    • judith03815
      judith03815 may51

      Posted

      I have an undiagnosed PANDAS boy. I started him on Omega-3 at around age 6 just for general health and I had also read about possible protective effects on brain. An unexpected effect that we observed was major improvement in bedwetting that he was still suffering at the time possibly as a result of the PANDAs. I searched for scientific data on it's use and found very little but as side-effects are minimal it may be worth a go if you are still stuggling.

  • fran25
    fran25

    Posted

    Hi,

    We also suspect our son has PANDAS. We live in Ireland but would travel to UK to meet a doctor who is a PANDAS expert. Would it be possible to get contact details for PANDAS doctors in the UK.

    Thank You,

    Fran 25

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